"I had a Liver Transplant 6 weeks ago and my donor was CMV positive and I am not. I am taking Ganciclover through a port in my chest every evening for 100 days. I'm about half way through.
My question is... I am constantly anxious…"
RichHTX's Discussions
Transplant and CMV
Started this discussion. Last reply by john May 16. 14 Replies 0 Likes
My donor heart was CMV positive but I was not? Is this going to cause me problems down the road? Possibly rejection?
RichHTX's Page
Latest Activity
Darak Pryde replied to RichHTX's discussion 'Transplant and CMV'"I think different transplant centers have different treatment philosophies, not to mention each case is unique. I was CMV - and my donor was CMV + and 9 right after I stopped taking Valcyte I had an CMV flare up, at just about 8 months…"
Cisco left a comment for RichHTX"Happy birthday Rich! Have a great day! You should chat with us some time. We meet on Saturdays and Sundays starting at 2 p.m. CDT. Hope to see you there!"
Rolando Lerma replied to RichHTX's discussion 'Transplant and CMV'"So are you know of valcyte, any signs of cmv."
DebbieK replied to RichHTX's discussion 'Transplant and CMV'"That does sound like a very difficult treatment regimen. So glad you are doing well now. I just found out two weeks ago why I was taking the valcyte because me and my donor are CMV positive. I thought I new everything that was going on but…"
Ken Carrell replied to RichHTX's discussion 'Transplant and CMV'"It looks like this post ended in August but I am always late.
My donor of my rt. lung had CMV. I too took valcite but the virus mutated and became valcite resistant. At that point there are only a couple of options left. I…"
RichHTX posted a status"5 months ago I could barely take two steps just walked 2 miles with 6 lb ankle weights on each leg dont let anyone tell you there is no GOD"
DebbieK replied to RichHTX's discussion 'Transplant and CMV'"I have moved out of the transplant apt. by the hospital back home with my Mom for now. Doing pretty good. The only problem I am having is when I first get out of the car into the outdoor heat in the 90's I sometimes get quite dizzy.
"
Gilly replied to RichHTX's discussion 'Transplant and CMV'"Hi Debbie
No, i felt better and had less stomach issues when the valcyte was stopped. How are you doing?
Gilly"
DebbieK replied to RichHTX's discussion 'Transplant and CMV'"Gilly.
I am on Valcyte for 6 months also and am on prograf. Did the 11 mg cause any new symptoms from meds?
"
Gilly replied to RichHTX's discussion 'Transplant and CMV'"Hi RichHTX, I had my dounle lung transplant at upmc in pittsburg 11 months ago, I took Valcyte for 6 months, no problems from valcyte but my prograf level tanked after it was stopped, i was informed you can only take it for 6 months and most…"
Profile Information
- Are you a member of http://TransplantBuddies.com ?
- Yes
- Where did you hear about Transplant Friends?
- Internet Search
- Share why you had to have a transplant.
- CHF Dilated Cardiomyopathy. Largest Left Ventricle Loma Linda Medical Center ever saw. Had an AICD implanted in 2007, an LVAD on March 31, 2011. Transplanted on 6/23/2011.
- Which Organ(s) did you receive? If you are on the waiting list, please share.
- Heart
- How many years have you had your Transplant for?
- 1 month
- I am Interested in Transplant Friends because...
- I have many questions and worries and would like to hear first hand from others who I think are modern day miracles and their expirences.
- Which Transplant Center has or will perform your life saving surgery?
- Loma Linda University Medical Center, Loma Linda, CA
- How has transplantation changed your life? If Yes, please share.
- Yes getting stronger every day. Just trying to cope with medicines and their side effects.
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Comment Wall (10 comments)
- At 8:39am on March 12, 2012, Cisco said…
Happy birthday Rich! Have a great day! You should chat with us some time. We meet on Saturdays and Sundays starting at 2 p.m. CDT. Hope to see you there!
- At 7:39am on August 1, 2011,
David said… - Hey Rich .. sorry I havent chatted in awhile . been busy .. my Bp was a lil high at frist but with walking really it started to lower, after cardio rehab I was better then norm on BP and lowered my heart rate to 80 or lower at times . meds .. well that I cant really say i had no problems with them . now all most 14 months now am on very few or so it seems since tx day 1, hopefully when your more able to exercise more am sure your meds will lower and BP and HR should get better .. well best wishes and hoping your get better each day .. chay again later .. David ..
- At 3:10pm on July 21, 2011,
Marina said… Rich,
I have heard that some people can have prednisone induced diabetes in the beginning. But for some lucky ones it goes away after the body adjusts to the meds. I hope thats your case as well!!!
Take care!
Marina
- At 1:21pm on July 20, 2011,
Hostess Rise' said…
You are welcome! I am so happy you like us. I thought about you today.
I love when our members comment about how they like these sites. Sometimes I forget how much this resource can mean to someone.
The next thing I will suggest to you is to look at your diet? Do you love white bread, sugary foods?
- At 5:49am on July 19, 2011,
i have sinus problems about once a year or less often I smell smoke, grapes, fresh paint etc... this is from pseudomonas due to Cystic Fibrosis. I would talk to your doctors. It does not hurt to use saline for your sinuses. Many doctors suggest this.
Drugs can definitely cause smells. Do you have acid reflux? Does anyone say your breath is off?
Glad that you like this site. Did you see http://transplantbuddies.com
We are two sites in one LOL
- At 8:16pm on July 18, 2011,
I would definitely see an Ear nose and throat doctor. Whenever someone is smelling something it must be coming from your own nose especially if nobody else can smell anything around you or on you. I am curious as to know what you find out.
Did you have an excellent sense of smell before tx?
- At 5:05pm on July 17, 2011,
Hi Rich
Welcome to transplant friends. Does anyone else smell this scent from you?
How are your sinuses?
- At 8:26pm on July 16, 2011, David said…
- Greetings and welcome !!
- At 6:46pm on July 16, 2011, RichHTX said…
- Hi guys new to site and have my first question. Does anyone get the smell of ammonia out of no where? It so strong at times it give makes me headachy
- At 5:20pm on July 16, 2011,
Rita said… - Hello RichHTX, Welcome to Transplantfriends. How exciting that you just received a heart transplant a month ago, Congrads! I am so glad you are feeling stronger each day. In the beginning they have those of us who have received transplants on a lot of drugs and but the good thing is that as time goes by doctors start to taper them down. Please feel free to post and questions on this site as well as our sister sister site transplantbuddies.org. We are on this road together and we all support each other by our knowledge and experiences. We are so happy you found this site. Wishing you the best.
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